For over 30 years, VNA nurses and aides have supported caregivers of patients we serve. Through our support, we’ve listened to thousands of stories and reflections, and many have communicated things they wish they’d known before taking on a caregiving responsibility – things that could have improved their experience.
Here are the five most common insights mentioned:
1. “The conversation” is best ahead of health decline.
Don’t wait until a loved one is in an advanced stage of their illness to discuss wishes for care because they might not be able to make decisions for themselves.
It’s not easy or comfortable discussing what should be done when a loved one’s health begins to decline. And, for many, it feels scary, awkward, or even unnecessary. But, from what we’ve learned, it’s best to have the conversation so difficulties don’t arise later on.
We’ve found it’s best to have the conversation about end-of-life wishes when patients are healthy, and when all necessary members of the family are communicating. This prevents conflict or confusion from happening.
2. Good health is important for me as well.
Caregivers shouldn’t ignore the effects caring for a loved one can have on their own health.
Caring for a loved one is exhausting, both mentally and physically. For example, it’s common for caregivers to become so focused on a loved one’s doctors appointments that they neglect to go to their own. And, if a caregiver’s health is neglected, mistakes can happen during their caregiving.
Caregivers should take time out of their schedule for personal time. Social engagement appointments and self-pampering are important.
Often times, caregivers feel guilty about “me time” or can feel self-absorbed. That’s a natural thought. However, mental and physical health is essential to providing the best care for a loved one.
3. A reliable support team can provide needed breaks. Caregivers need breaks from their responsibilities to care for their physical and mental health. Therefore, they should ensure a reliable team of family members and/or paid professionals is assembled early on to help give them time away.
Caregivers that wait until a break is needed to look for help often struggle. So, organization in this time is key. There are many great resources that can help connect caregivers to outside help, including, paid health aides, volunteers, religious organizations and students.
Some great online resources to find help include:
Care.com
Aplaceformom.com
Agingmissouri.org
Eldercare.gov
Seniordecision.com
4. Caregiver support groups can provide worthwhile ideas and strength.
Taking care of a loved one is physically taxing and emotionally draining. So, it’s beneficial for caregivers to connect with a support group.
Yes, family is an excellent outlet for caregivers to cope, but communicating with people experiencing a similar situation can offer invaluable support, advice and insights. Caregiver support group locators found online include:
Caregiverstress.com
Caregiver.org
MHA-em.org
5. Deciding what type of care is best must be a priority.
Caregivers must take many factors into account when deciding the best care for a loved one. Common questions that inform decisions include:
Should they live with me?
Will I be able to handle their care or do they require professional care?
Do they need an assisted living facility?
And, while these questions can provide a roadmap to the type of care needed, there are also visible signs that can assist in decisions. Telling signs include:
limited autonomy
at-risk safety behaviors
inability to ambulate
incontinent
and increased forgetfulness
To verify observations, it’s a good idea for caregivers to contact a hospice service or healthcare provider to have a loved one’s care assessed.
Conclusion
Caregiving for a loved one is overwhelming, and most caregivers do not realize the responsibilities that are required to do it well. But, those that approach tasks in bite-sized chunks and use support groups or family members for emotional support will have a better experience.
Caregivers should remember to have patience with their patient and above all, realize they're not alone. Support is just a text message, email, or phone call away.
